Global ARCH / Uncategorized  / Talking about Congenital Heart Disease and Mental Health

Talking about Congenital Heart Disease and Mental Health

1. What would you suggest to parents of CHD children when it comes to building resiliency so that mental health issues can be addressed early?
I’d like to first say that I have a great deal of respect for parents and caregivers of children with CHD – I recognize how stressful their own experiences can be and would encourage them to seek support for themselves as needed. I recommend keeping lines of communication open, so that children feel comfortable coming to their adults with any psychological or social concerns that might arise, both related and unrelated to health. It’s important to avoid minimizing children’s concerns or making false promises (eg, by saying things like “don’t worry about it” or “I promise everything will be okay.”)

Also, I recently became aware of the ISUPPORT rights-based standards for children having health care procedures. It’s my understanding that these were primarily directed toward health professionals. However, I think they also provide a nice framework for parents and caregivers who wish to advocate for children’s physical and psychosocial well-being in medical settings.

2. What are some of the factors that can contribute to mental health problems in people with CHD?
The first thing I’d say is that people with CHD face the same psychosocial challenges that people without CHD face – things like relationships, school, employment, financial stressors, discrimination, etc.

They also face CHD-specific stressors that can be chronic and/or major life events. Chronic stressors are those that happen on an ongoing or frequent basis – such as having fatigue or other physical symptoms that interfere with preferred activities, taking medications on a daily basis, or medical appointments that interfere with other things going on in a person’s life. Major life events happen less frequently, but can have significant impact when they do occur – examples include surgery or another major medical procedure, cardiac device implantation, or a hospitalization. We know that negative childhood and adolescent experiences, both related and unrelated to health, can affect people throughout the rest of their lives.

3. Mental health support can be hard to find.Can the CHD care team help in this area, and who should parents of CHD kids, or CHD adults, speak to?
I definitely recommend speaking to one’s CHD team for referral recommendations. I strongly advocate for the integration of mental health professionals within CHD teams, although that’s unfortunately not common practice…yet! However, CHD teams might know of mental health professionals in the community with experience working with individuals and families affected by CHD. Primary care professionals are also often helpful referral sources.

I also believe in the collective advocacy of the voices of patients and families with CHD. I think that the more often that patients and families advocate for their mental health needs, the more likely it is that CHD programs will develop pathways for mental health care. I sense that the field of CHD is moving in the direction of accepting psychological wellbeing as an essential component of CHD outcomes.

The Roadmap Project, focused on the mental health of children, teens, and adults with chronic health conditions, has so many excellent resources, including a downloadable PDF on ‘choosing a therapist’ available HERE.

4. Are there specific things CHD patients can do to reduce the likelihood of having problems with anxiety and/or depression?
There are self-care strategies that can be helpful as preventative approaches (ie, to reduce the likelihood that mental health problems arise) as well as strategies when psychological concerns arise. We include a list of examples of self-care strategies in our article for patients and families:

  • Have good sleep skills and a consistent sleep routine
  • Eat a healthy diet
  • Stay physically active (it is good to ask one’s CHD team for advice about physical activity)
  • Keep a regular schedule (e.g., school, work, hobbies, volunteer work)
  • Use relaxation techniques (e.g., breathing exercises, meditation)
  • Pace oneself (do not overdo it on ‘good days’)
  • Focus on strengths and what one can do
  • Challenge fears by open discussion with family, friends, and medical team
  • Plan pleasant activities
  • Use helpful self-talk (Ask: What would I say to a good friend in this situation?)
  • Connect with supportive family and friends
  • Connect with others with CHD through hospital or online support groups

5. When looking for mental health help, are there differences in the types of specialists and what they offer? What are the most important factors to consider?There are different types of mental health professionals. This is a list that our writing team previously prepared:

Psychologists: non-medical doctors who specialize in mental health, focus on psychotherapy and/or neurodevelopmental/neurocognitive testing, and do not prescribe medications.
Psychiatrists: medical doctors who specialize in mental health and who can prescribe and monitor medications.
Clinical social workers: social workers with extra training in psychotherapy.
Mental health nurses and nurse practitioners
Licensed professional counsellors
Couples and family therapist 

When looking for mental health treatment, it’s important to consider personal preferences – whether someone prefers psychotherapy (“talk therapy”) or whether one is looking for a clinician to prescribe medication. A practical factor involves access to and availability of mental health professionals. Depending upon one’s country and one’s personal resources, mental health care might be free within the public system, one might use health insurance to access it, or one might pay out of pocket.

Although it might not be possible to work with mental health professionals with CHD experience, I recommend working with clinicians with experience working with individuals with chronic health conditions when possible.

6. There’s a lot of information about antidepressants and anti-anxiety medications. Can you talk a bit about when they might be appropriate for a person with CHD.

As I’m not a psychiatrist or medical doctor, I don’t prescribe medications. However, the writing group of our Scientific Statement included four physicians, two of whom are psychiatrists. They put together a really helpful table that summarizes the different classes of psychotropic medications (for mood and anxiety disorders, attention-deficit hyperactivity disorder, or psychotic symptoms) and unique considerations for people with CHD. If I were a patient curious about taking one of these medications, I would actually take a copy of this one page table with me to show the psychiatrist/prescriber!

You can access the original American Heart Association article HERE.

A patient/family-friendly article is available HERE.

A BIG thank you to Dr. Kovacs for sharing her expertise with us!

Global ARCH

Nahimeh Jaffar 

Nahimeh Jaffar has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals, working within clinical settings such as hospitals and clinics. In addition, she worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Ms. Jaffar has been involved in preventive health initiatives in collaboration with the Center for Disease Control (CDC, USA) and the Center for Medicare and Medicaid Services (CMS, USA).


Ms. Jaffar holds an MBA in Business Development from the Swiss Institute of Higher Management, Vevey, Switzerland, and a bachelor’s degree in Consumer Affairs from California State University, Northridge, USA.

Amy Verstappen, President

Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world.  Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.